I'm not really back, but this stuff is eating me up from the inside so I had to get it out. Nothing to do with adoption. This one doesn't get a tea alert, it gets a serious TMI alert instead. Oh, and if you want to be my friend for-evah? Help me figure out the chords to this thematically-appropriate song. It's been stuck in my head for days.
A few years ago, we went to the big hospital in Oxford for a series of genetic tests. Well, I say we went but J was just there to hold my hand- it was my arm that they took all the blood from. We got the results we knew we would, but that didn't make receiving them any easier. Seeing it all in black and white was what pushed us, eventually, after a lot of grieving, towards adoption. What I feel like I should say here is that I am grateful for what we went through, then, because it led us to our wonderful children. And our children are wonderful, of course, but I still can't feel grateful for those months, for that entire year. I don't know what to say about that time of my life except that I can't remember a single good thing about it. It was a season of grey despair.
And now I have to go back to the same hospital for a new round of tests. I don't want to go.
It's nothing to do with babies, this time. On this occasion I'm trying to avoid dying young of a gene-linked cancer. I don't even know if I've got the gene yet - hence the tests. My grandmother had it. She got it from her mother and passed it to my mother. I don't yet know if she passed it to me. This is the kind of gene where 'breast cancer runs in the family' becomes a hilariously colossal understatement. This is the kind of gene where if you've got the gene, you'll almost certainly get the cancer - breast or ovarian, or maybe melanoma. "Don't forget to check your freckles!" one of my aunts told me on our recent trip back to Australia. "People always check their moles but freckles can kill you, too. Don't forget to check your freckles". So I've started checking my freckles, but it's not really possible to keep an eye on my ovaries, seeing as how I don't have X-ray vision. Mammograms, for women who carry this mutation, are scheduled regularly and frequently but lots of doctors recommend managing the risk by just getting everything removed. Hysterectomy including ovaries. Total mastectomy, with optional replacement breasts in the cup size of your choice.
I've known about this family risk for years and years, since it was my mother and her sister and brothers getting the tests (because yes, men can get breast cancer too and how annoying would that be?) But I've always thought it was something to think about later, in the future. I thought the risk really kicked in after menopause. Occasionally when family would ask me whether I was going to get tested I would say that I was limiting my gene mutation diagnoses to one per decade and this next one wasn't due until 2017.
But then I was talking to my cousin Beth a few weeks ago and she has just had tests done. She came back positive - unfortunately - and told me that her doctor was horrified that she had never had a mammogram. She was pretty much marched straight from the diagnosis chair into the medical imaging suite, where they gave her an MRI rather than a standard mammogram because of her age and risk. She's not yet thirty five.
Forgive me if my medical information is not as good as it should be, but I'm getting it all second hand through Beth, seeing as how I'm too chicken to get the tests myself. I couldn't believe all this when she told me, and we had the conversation about how we thought the risk started at menopause but no, apparently, if you're going get your bits removed it's sensible to do it when you are five years younger than the youngest age you have had a relative die. "Weren't all Grandma's sisters in their fifties when they died?" I said to Beth. And she said no - Grandma's mother died aged forty three. Breast cancer. Her oldest sister: ovarian cancer. Forty three. The next: breast cancer. Also forty three. And another. You can probably guess what age she died, too.
My grandmother and her baby sister Isobel were the only two girls who lived. Grandma got breast cancer too - at forty three- but survived, maybe because she was the youngest of the ones who got it, because treatments were more advanced than they were for her mother and sisters. I wanted to mention her other sisters by name, but I can't remember all of them. I don't know their names, because I didn't know them. Because I never met them. Because they all died at forty thiree. This is the kind of suckage that words really don't begin to touch.
I talked to my other cousin, Anna, about it. She is in the middle of the tests, and she is hugely upbeat about the whole thing. She's upbeat about most things; I thought this might finally push her over the line into pessimism but apparently not. She doesn't see it as a big deal, and she admitted that there. is a tiny part of her that will be disappointed if her tests come back negative. "I am totally looking forward to my new boobs!" she told me. "I'm going to go up a few cup sizes and then watch out, boys, because I am going to be flashing them all the time". And I had to laugh because I have no doubt that she will.
Talking to her helped, but I keep lapsing into flat despair about the whole thing. Why can't I have her attitude? Partly it's just personality, I guess. Never mind genetic mutations; I tip over into pessimism when I run out of breakfast cereal. Partly - if I'm honest - it might be because I don't actually want new boobs. I don't mean to seem boastful, but I am perfectly happy with the ones I have currently. Seriously - of all my body parts, why remove these? They give me zero psychological trauma. (If we were talking about cancer of the buttocks, I might be singing a different tune). I'm not Anna Nicole Smith, but I'm not an ironing board either. I have no problems in that department. If I do so say myself. I don't want new boobs.
A bigger part, though, is about the operations. I'm a total coward about physical pain, and I'm terrified of those procedures. Terrified. I had my tonsils out when I was twenty five and it hurt so much; I know it sounds trivial but believe me, it wasn't. I would wake up in the night weeping with pain. I don't want to go through that kind of thing again. I got my appendix out when I was eight, too - also horrible- and I really thought I was done with the elective removal of internal organs. If I ditch the uterus and the ovaries and the boobs? Soon I'll just be a brain in a jar, typing on my keyboard with electronic thought pulses.
I've seen women in recovery from these operations. It's not pretty. It takes weeks and weeks and weeks. My brain skitters to all sorts of horrible places when I think about it. Who would look after my kids? What if i don't get a good endocrinologist and the HRT isn't managed well? I'll get terribly depressed and my hair will fall out. And I keep remembering a description I heard of a mastectomy and how they first have to peel all the skin off your chest. Are you dry heaving yet? I know I am. The one thing that scares me more than these operations? Not having the operations and then dying, aged 43, leaving my children and husband alone with nobody to cook for them.
Of course, thinking about preventive surgery for reproductive cancers has a few extra layers for a woman who has never been pregnant. I can't decide whether it's terribly efficient - sure, take my uterus and ovaries, I wasn't using them anyway! or absolutely heartbreaking. My uterus and ovaries? But I never even got to use them. Okay, who am I kidding, yeah, it's the second one. Some days it makes me feel so sad that I just want to howl at the moon.
That's why I haven't had the tests yet, I suppose. Once I get them done, if I'm positive, I have to start making decisions. And I am not ready. I don't want to end up in a situation where I am pressed into making irrevocable decisions about our next child or children, yet. I feel less and less like I want to try the fancy IVF, but I still don't feel ready to close that door forever, either. I'd rather have the luxury of the time I thought I had. I'd rather let my uterus shrivel up on its own, when it's ready. I'd rather not have to deal with any of that. And then I get a flash of a vision of my husband hunting through the cupboards for a tin of baked beans, of my children motherless - again - as they go to secondary school and I know I have to face up to my responsibilities.
Some of Anna's words come back to me - "Of course I'd rather not deal with this, but we are so lucky. If we were two generations ago, we would only have ten years left and then we would die and have no warning. And one generation ago, HRT was not well developed and fake boobs looked really fake. Now we really have nothing to worry about!" I know she's right, even if I can't make myself feel that positive. And believe me, I see the irony of dealing with too much genetic knowledge when my children have so little. Some days I want to push their stroller into the genetics clinic, roll up their sleeves and ask the nurse to run every test in existence, just in case. Maybe they will decide to do that when they are older, but for now I am holding off. I don't want to make this decision on their behalf. I know from personal experience that these diagnoses are not like diagnosing a virus. It's deeply, psychically, unsettling to find out this kind of bad news, if there is bad news to be had. It's already happened to me once. There's a fifty-fifty chance it's about to happen again. I know I need to make the appointment, but I can't make my fingers dial the number on the telephone.
And of course - of course - I might come back negative. This one may have passed me by. I can't imagine the relief if that turns out to be the case. If so, I promised my sister I would get tested for celiac disease. Because guess what? It turns out that runs in the family, too, and if ignored can result in bowel cancer. "You've probably got it" my sister told me, shortly after the freckle conversation with my aunt. "You'd probably feel much better if you went gluten-free. I did." "But I feel fine" I said, frustrated, and then she mouthed 'bowel cancer' and I went into my room and cried. I know she wants to keep me around so that we can squabble into our old age together, and I love her for it, but seriously, a third thing? Shallow end of the gene pool, that's our family, for sure.
I can't even think about testing for that one yet, although occasionally when I'm eating a particularly delicious slice of toast I feel a stab of fear that our wheaty, crunchy days together might be numbered. What would I miss more, I wonder - bread or my real boobs? Boobs or bread? If I'm honest, the answer is probably bread. Fake boobs look more real than fake bread tastes. I don't know why I have these thoughts - It's not like I get a choice. I might lose both. I might lose neither.
In the meantime, I know I should make that appointment. But I can't. I can't. I'm not ready to get on the healthcare treadmill if we get bad news. I'm not ready for that next phase of life to start. I don't want to deal with it. All these molecules don't make me who I am.
Turns out that being a grownup is seriously, seriously overrated.